merry christmas

Hi all,

Jana has been an absolute champion the last 3 x weeks. She has been eating well and as happy as larry , and at childcare she has been doing some amazing paintings. She does them all unassisted which amazes me and they have all the kids crowding around her as she is the star of the class.

We have a busy patch coming up with xmas at our house this year plus Verena's nephew is staying with us. On boxing day we are having the sausage sizzle for the Biorehab for kids charity so a 6am start to pickup everything them finish at 5pm. Got plenty of helpers so will be a good day.

The biorehab for kids charity which pays for the Perth ABR Clinic costs got a much needed injection with a Telethon Grant which will see us through for at least another two years. That was such a relief as it was getting to a stressful stage as the money was running out fast.

Not much happening for the rest of christmas just spending lots of time with Jana and Verena and I'd say lots of beach. We took Jana to the beach a few times last year and she loves the water. The colder the better for her , she giggles her head off when you drop her in the cold water.

well hope you all have a great xmas and stay safe.

all the best from Paul , Verena and Jana. xx

been a while

Hi

Apologies for not blogging for a while it seems life got busy again... Jana has been going really well with her drinking. We now have a special cup that is cut out to go around her nose and she drinks on a good day 400 mls of thickened water. Her eating is good but still something upsetting her and sometimes she doesnt eat her meals. I think her 3 year old molars are moving early.

Jana and her Mum have been going to Hydrotherapy every week and Jana loves it. We also chuck her in the spa when we get the chance but it is a bit small to do much. She is still doing conductive education and now we are trying to potty train her which is not so much fun. She loves her childcare and they are so great there with the extra things they do for Jana, we really are lucky to have her in this childcare. She comes home buggered and is asleep by 6.30pm.

Biorehab for kids has the sausage sizzle on the 26th - boxing day at Melville Bunnings so we should raise some good money towards the ABR clinics. We also got a spot on the 29th Jan so a double bonus.

Well better go . Jana says hi to everyone.

Paul

all better

Hi

My teeth are all through now and no more pain. The last 2 x days Mum has used a styrofoam cup with a cutout in it for my nose and she gets me to drink from that. Guess what I love it.... finally we found something that I can use to drink from that doesn't scare me. I have been drinking up to 300mm a day which means definately no more tube if I keep it up.

Becuase my teeth don't hurt anymore I am eating really well again and trying all sorts of different food. It is amazing how well I eat now after the "no tube program" mum and Dad did with me via Austria. I also do ABR every day and don't complain anymore. I just watch the Wiggles while Mum works on my back. At night I use the machine all night and now I have a big bed it is so easy. Mum or Dad usually end up sleeping in my bed now when I wake up as it is so comfy......

Soon we all go to Queensland as Dad has a conference to go to so we go too. We are staying at the Gold Coast and Mum and I are going to go to Seaworld and also go shopping. Can't wait it should be fun.

Ok better go. Lots of luv

Jana

Hi

Well this week we went to hydrotherapy again and I am loving it....we get to splash around and do excercises.
I am now in the toddlers room at childcare and this week I spent the whole day with the toddlers. Now I am with the big kids I have to do more things which is fun. I am slowly getting better after my last big tooth came through. It still really hurts and every day I get alot of pain from them.
Mum and Dad were excited becuase Mum's Bad Egg shirts got on the footy show the other night. Sam Newman wore our shirt on the show the last two weeks. Dad sent some shirts to him and he was good and wore them on the show. It was great !! I sent him a thankyou letter.
This weekend I spend alot of time at Nanna's which should be fun and Mum and Dad go out and relax. I have my tube back in for a few days again just to get some water into me as while my tooth hurts I don't drink at all and can't do poo's. Hopefully soon I will start to drink again.

Ok well we will see you next week.

Luv Jana xx

my own big bed

hi everyone,

sorry it's been so long but I've had more teeth coming through and been very grumpy for a month now. These last two big teeth just keep coming and then I got an ear infection (in both ears!)

Well for the last 5 months I haven't been sleeping very well and usually end up in Mum and Dad's bed because it is nice and warm. Yesterday we got my new big bed delivered and Daddy set it all up and took my cot to pieces. I went shopping with Mum on Saturday and I picked out the Dora the explorer bed linen. My first sleep was good but I still woke up half way through the night so Dad stayed with me for a few hours then Mum jumped in my bed for a few hours until I woke up this morning.

Hopefully this means I can get back on the ABR machine at night as I have been naughty and not getting much machine time.

On the weekend we went for a walk through Wireless Hill Park and looked at the wildflowers then jumped in the spa and did some hydrotherapy. Mum takes me every week not to the Centre for Cerebral Palsy and we go into the pool for hydrotherapy there as well. I love the water.

Thats it for this week.

Luv Jana xx

just one last tooth.....

Hi everyone,

Well this week I have been in alot of pain from my last tooth and it is driving me crazy. It is a big one too and once this one is through I will be sleeping like a baby. I have been keeping Mum and Dad up all night and I can't get on my ABR machine at the moment.

I haven't been drinking much water either so Mum gives me mandarins to suck on and I get all the juice out of two mandarins at a time. My eating is still good and I even have solid food twice a day as well as my pureed fruit and vegies mixed with yoghurt.

Dad has been working alot on the house and has built a great backyard for me to play in. We now have a pergola to keep the sun off and the fish pond has been moved to give me more room. The spa is back running again so this weekend we start hydrotherapy again. It's a bit cold to do it at the moment at night so Sunday afternoons sound good to me.

This Saturday night we have Nanna and Gwen coming over and Dean and Seiko bring little Hikaru over. She is only 5 months old and very cute. Mum is going to cook a traditional Swiss fondue but I will be asleep so I won't get to taste it. Hopefully today I can be happy enough to go to childcare as I had a bad fever last night from my tooth. They have put me in with the big kids now and we have a great time.

OK next time we talk I will be happier as my tooth will be through.

Love Jana. xx

happy birthday jana

Happy birthday to me , happy birthday to me.

Two years old today , woohoo. We are having a party tonight and hopefully I get lots of great presents and yummy food.

I have been such a good girl this week and back to sleeping in my own bed after our long trip to Switzerland. I am back on the ABR machine at night and mummy is giving me the manual excercises as well to make me strong.

My last tooth is coming through soon and then thats it for a few years , gee I am sick of having sore teeth. Off to childcare today and they said I have grown up while I was away and they all missed me very much.

Bye

Luv Jana